In India, the biggest challenge NF1 patients face is the absence of financial aid under the National Policy for Rare Diseases. Since NF1 is not officially recognised under the policy, families are left to bear the entire cost of treatment on their own, which can run into lakhs of rupees per year
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The seven-year-old boy has been fighting an uphill battle against Neurofibromatosis Type 1 (NF1), a rare genetic disorder that causes tumours to grow along nerves in the body. His father, Rajpratim Borah, a contractual employee in a government department, has already sold land and exhausted his life savings to afford the expensive treatment. Now, with no funds left, he fears he won’t be able to continue his son’s medication.
For Borah, the emotional toll is matched only by the crippling financial burden of affording Koselugo (Selumetinib), the only medicine showing promise in shrinking the tumors. But with his resources depleted, Borah now faces an agonising question: how will he afford the next round of treatment?
"My son was diagnosed with NF1 through MRI and genetic testing. The doctors prescribed Koselugo (Selumetinib), a targeted therapy that has helped reduce the tumor size. But the treatment is lengthy and extremely expensive. I managed to afford it for eight months by selling 1.5 bighas of land and using my entire savings. Now, I don’t know how to buy the next course of medicine,” Borah told G Plus.
"As a contractual employee under the Assam government’s Panchayat & Rural Development (PNRD) department, I barely make enough to support my family. Koselugo is not just expensive; it is unaffordable for middle-class families like mine. I managed to buy it for eight months, but now my son needs continued treatment, and I have nothing left," Borah said, his voice heavy with despair.
NF1 is a genetic disorder with no cure. Patients require lifelong management, including MRI scans, genetic counseling, and targeted therapy to prevent complications. Koselugo, an FDA-approved drug, is a lifesaver, but its cost runs into lakhs of rupees per year, making it virtually impossible for most Indian families to afford.
Neurofibromatosis Type 1 (NF1) is a genetic disorder that causes tumors to grow on nerves throughout the body. These tumors, though usually non-cancerous, can lead to serious complications, including blindness, skeletal deformities, learning disabilities, and even cancer in some cases. NF1 is one of the most common rare diseases worldwide, yet in India, it remains largely undiagnosed and untreated due to low awareness and lack of policy support.
In India, the biggest challenge NF1 patients face is the absence of financial aid under the National Policy for Rare Diseases (NPRD). Since NF1 is not officially recognised under the policy, families are left to bear the entire cost of treatment on their own, which can run into lakhs of rupees per year. Many patients—especially in rural areas—never receive a diagnosis, leading to lifelong disabilities and reduced quality of life.
As per media reports, globally, NF1 occurs in approximately 1 in every 2,500 to 3,000 individuals.
"If the Government of India includes NF1 in the National Policy for Rare Diseases (NPRD), it would make a huge difference for families like ours. Early diagnosis, financial aid, and dedicated healthcare programmes would mean that parents don’t have to sell everything they own just to keep their children alive," Borah said.
His appeal isn’t just for his son—it’s for every child battling NF1 in India, many of whom remain undiagnosed or untreated due to lack of awareness and government support.
NF1 is just one of many rare diseases affecting children in Assam and the Northeast. However, the absence of a structured policy means that patients struggle to even get a proper diagnosis.
Talking to GPlus, an official from the Rare Diseases India Foundation said that Guwahati alone has at least 3 to 4 identified NF1 patients, but the actual number is likely much higher.
"Without targeted awareness campaigns, dedicated health programmes, or funding, these patients remain invisible to the system. Many families don’t even know where to go for diagnosis, and even if they do, they cannot afford the treatment," the source said.
The problem is compounded by the lack of inclusion in the NPRD, which means that NF1 patients do not qualify for government aid. While other rare diseases, like Lysosomal Storage Disorders (LSDs) and Spinal Muscular Atrophy (SMA), have been included in national policies, NF1 patients are left to fend for themselves.
In a positive development, the Government of India has announced two new Centres of Excellence (CoEs) for rare disease treatment in the Northeast—Assam Medical College, Dibrugarh, and RIMS, Imphal. These institutions will offer specialised care, reducing the need for patients to travel to metro cities for treatment.
However, without NF1’s inclusion in NPRD, even these facilities may not be able to help patients like Borah’s son. "A Centre of Excellence is only effective if the treatment is accessible and affordable. Right now, NF1 families still have no financial support from the government," the source said.
While the Centre has taken some steps towards rare disease care, Assam’s state government has no dedicated policy or awareness programme for NF1.
A senior official from the Assam Health Department admitted that there is no proposal from the state government to support NF1 patients.
"For communicable rare diseases, we have schemes and funds, but NF1 is not included in the National Policy, so there is no financial provision for it," the official told G Plus.
This means that, for now, families like Borah’s are on their own.
With no government support in sight, Borah has only one option left—to appeal to the public for help.
"If anyone can support my son’s treatment, it would mean the world to us. No parent should have to choose between saving their child and financial ruin," he said, holding back tears.
For now, his fight continues—against time, against the system, and against a disease that just refuses to wait.
